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Change needed to get people with learning disabilities out of Scottish hospitals and back into the community

Blog, 02 March 2016

Changes are needed to ensure people with learning disabilities can move out of inpatient facilities when they are assessed as being able to – and are not kept resident for months or even years while a suitable package of support is arranged. Dan Parton comments on the Mental Welfare Commission’s report on this key issue.

For people with learning disabilities in inpatient settings in Scotland, it appears that being told you are ready to go home, and actually getting home are two very different things. The Mental Welfare Commission’s report paints a picture of many people with learning disabilities stuck in often inadequate, inpatient hospital-type facilities long after they have been assessed as ready to return home.

The report found that 58 out of 180 patients had been identified as ready for discharge, but that their discharge had been delayed for months or even years – one person had been waiting for nearly 9 years to go home.

As Colin McKay, chief executive of the Mental Welfare Commission, put it: "The main reasons for delays in discharge were lack of funding, lack of accommodation, lack of an appropriate care provider, or a combination of these issues.”

It seems that Scottish learning disability inpatient facilities experience the same difficulties as those in England, in not being able to discharge everyone back into their community when they are ready to move.

Likewise, the issue of the majority of units being poorly maintained – 12 of the 18 units were considered not fully fit for purpose – is familiar to those south of the border.

While on the plus side, the carers interviewed by the Commission were generally complementary about the services, I couldn’t find anything on what the opinions for those who are living in such services were. One might think that would be important.

In England, there have been several strategies since the Winterbourne View scandal in 2011 that have aimed to address the issue of people with learning disabilities being inappropriately placed in inpatient units and all have failed. Indeed, the number of people in such units has increased during that time.

NHS England is the latest to have a crack at solving the problem, launching its ‘Homes not Hospitals’ strategy back in October 2015. It has been conceded that the problem is more complicated than first thought, and the timescale for this strategy – three years – is more realistic than previous ones. However, there have been questions again as to whether its aims will be met, with a recent report by Sir Stephen Bubb saying that NHS England’s proposals were based on over-optimistic assumptions.

The Mental Welfare Commission’s recommendations for change are, in many ways, similar to those found in recent English strategies. For instance, the Scottish Government is called on to ensure that monitoring and reporting of delayed discharge is robust.

Arguably, this is one of the most important recommendations: “NHS Boards should ensure through their capital planning programmes that within three years all learning disability inpatient units are fit for purpose. Units should provide a well-maintained unit that is clean, odour-free and minimises the effects of noise. They should have adequate facilities to ensure that patients, including those with physical disabilities, can be nursed safely and have appropriate access to facilities to develop and maintain their daily living skills.”

As mentioned previously, the majority of units were not considered fit for purpose. This is a shocking state of affairs and needs to be addressed with haste – nobody should have to put up with living in substandard conditions.

The issue of people remaining in these units after they’ve been assessed as ready to return to their community also needs urgent action. While the numbers involved are small – 58 people – that doesn’t mean they are insignificant. These are people whose lives are wasting away because they are being denied the chance to live a life of their choosing in their community and reach their potential. McKay also noted that: “a hospital is not designed to be a home, and having people stay for years in a hospital environment, often without all the facilities they should have, is not acceptable.”

He’s right – and it is indicative of the priority given to this group of people that this situation has been allowed to develop and go on for so long.

McKay called on the Scottish Government to, as a matter of urgency, “work with the new integrated joint boards to end these long delays in discharge, and to ensure all learning disability inpatient units are fit for purpose.”

Hopefully, the Scottish Government will heed the Commission’s recommendations and put an end to these long waits. But they must avoid the same pitfalls as those that have been experienced in England; support packages must be put in place in the community to ensure there is somewhere people can move to, that meets their needs.

As Michael Matheson, the then minister for public health, said in the introduction to the Scottish Government’s learning disability strategy ‘The Keys to Life’ in 2013: “People with learning disabilities should also be supported to live independently in the community wherever possible.”

This report shows that isn’t happening, but it most definitely should be. Best practice examples are out there – north and south of the border – and there is no reason why they shouldn’t be standard practice throughout both countries.

This article first appeared on CareKnowledge. For more information on CareKnowledge and details of how to subscribe, go to www.careknowledge.com